Five Key Phrases for Health Advocates

by julie on April 30, 2014

Living with a chronic or invisible illness like narcolepsy can be confusing and overwhelming. Here are the key phrases that have helped me survive and thrive in critical moments when I needed to advocate for myself and my health. I suggest adding these phrases to your vocabulary asap.

#5. “Is there someone else I can speak with?”I used to be agreeable and trusting on the phone, til I got caught in a few snafoo catch-22s with my health insurance and realized that (some) customer service representatives say stuff with authority that is blatantly incorrect. Meanwhile, my health is on the line and they could care less. Now, I advocate for myself – I listen respectfully but if anything doesn’t sit right with me, I kindly ask to speak to someone else – aka a manager. I used to think this was rude, but now I realize it’s quite standard. Keep going, keep holding, keep calling back.

#4. “I haven’t heard that joke…. TODAY.” I used to think that narcolepsy was the only illness that got made fun of so much, but in meeting various health advocates, I’ve learned that unwelcome humorous reactions to diseases and disorders are all too common. Even though I confidently speak about narcolepsy in many forums, I am not immune to the silly jokes.

Just last week, someone at work overheard that I was giving a presentation at USC on narcolepsy, and he felt compelled to join the conversation to laugh and add a joke about falling asleep. Good one, buddy. I try to brush it off, it’s a small price to pay for raising so much awareness that evening at USC. When I told my boyfriend later, he shared a great come-back he’s used in his life: “I haven’t heard that joke… TODAY.” I can’t wait to try it! I like to view every conversation as a chance to raise awareness, and I’ll follow up explaining “Actually, narcolepsy is nothing like the movies, its a really fascinating neurological disorder.”

#3. “Can I ask a favor?”I am an independent woman, I like to think I can do everything for myself. But in reality, my friends and family help me in different ways and I’m VERY thankful. (Read here about creating a strong support system.) It’s hard to ask for “help”, but what about asking for a favor? You likely do favors for your friends and family as well. It’s okay to lean on others sometimes, we all lean on each other at times to get by.

#2. “How should I proceed to resolve this issue?”I used this line at the pharmacy and the DMV last week, but you can use this with your doctor or any customer service rep. It helps folks see things from your perspective, which may make them a bit more understanding. It also reminds them that you aren’t trying to be problematic – you weren’t trying to give them a prescription in which your doctor wrote the wrong YEAR (no joke). Your intentions are positive and genuine – you are just looking for resolution (aka getting what you want/need/deserve as quickly as possible). This question also helps me to talk through the steps and make a plan together, as sometimes a key “step” will come up then that one of us had overlooked.

#1. “No.”There are many demands on your time and attention, but only so much energy to go around. Saying “no” to some opportunities is really saying “yes” to what’s MOST important to you. By freeing up your time, you will be able to devote yourself to the people and activities that matter most to YOU. You don’t always need to explain yourself either. I have a hard time saying “no” and feel the urge to explain myself, but these explanations often feel futile – especially when related to my narcolepsy. It’s okay to simply say, “Thank you for thinking of me, but I won’t be able to make it.”

Great and useful phrases here, Julie! Yep, “Oh wow, I haven’t heard that one… today,” has been very useful for me over the years. It’s polite, but still speaks to the other person’s ignorance just a tad.

I’ve practiced #5 for many, many years and it absolutely works (sometimes you may have to be forceful, some would call it rude, not me).
I absolutely suck at #1, I need to look for opportunities every day to practice this one!
#4 – I am way too sarcastic to use this one, but I will try to remember it.

I’d like to add #6: be on the lookout for promising opportunities to bring up Narcolepsy. I have been amazed at how often I receive a positive and inquisitive response!

A friend recently told me a fantastic expression which definitely applies to narcolepsy and cataplexy – “Don’t talk the talk if you haven’t walked my walk”. I tend to get quite frustrated when people tell me that they understand how I am feeling, or what I am experiencing, as if they are experts on narcolepsy. Often, I just have to remind myself that many of the symptoms of narcolepsy are difficult for other people to understand, and may well require a little more explanation!

I have always been amazed by “friends” in a political discussion about the homeless, addicts, welfare etc. Somebody always seems to bring up those lazy people on disability and then turn to me and say not you of course! I look around the group and think there isn’t anyone else disabled here.

When I am snippy. I say you know narcolepsy is like being in a dream state all day long. When I wake up tomorrow I will find out if you are real or hopefully a figment of my dream!

I love your description, “narcolepsy is like being in a dream state all day long.” Very powerful, thanks for sharing, Michael. I certainly understand your frustration with these “friends”. Hang in there! Your friend, Julie